Ombudsman highlights progress in end-of-life care support

Hospital staff who broke the news to a woman of her father's death told her he had been found "pulseless", she told the Ombudsman in a complaint about the family's treatment.

The case is one of a small number highlighted in the office’s progress report on end-of-life care issues, published on Thursday.

Ombudsman Peter Tyndall said there had been "very considerable progress" since he published his report, A Good Death, four years ago but there were still aspects of the service that required "urgent attention".

Mr Tyndall said that despite “excellent educational initiatives” for staff, complaints about poor communication during end of life continue to come before him.

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“One complainant said she was left upset and confused about her husband’s prognosis when the doctor told her ‘he did not know when her husband’s demise would be’,” the progress report said.

“Another family was told that their father’s condition was ‘incompatible with life’.”

The Ombudsman said the conversations had left family members “confused and distressed”.

“It is clear, therefore, that ongoing training must be available to support and guide clinical staff when bad news must be shared with patients and their families. In addition, hospitals must ensure that opportunities are available for staff to learn from others trained in this area,” the report added.

More than 11,000 people die in acute hospitals every year.

Speaking at the launch of the report in Dublin, Mr Tyndall said reports also continued to reach him of relatives of people who had died being handed their personal possessions in refuse sacks. Most hospitals now have a special “handover” bag for such purposes.

Improvements

Since the publication of Mr Tyndall’s A Good Death report in 2014, the Hospice Friendly Hospitals Programme has been rolled out in most acute hospitals, there has been an increased availability of specialist palliative care services, and the physical facilities for patients and their families have improved.

There has also been an increase in the number of end-of-life co-ordinators.

Mr Tyndall said the collaborative work of the Irish Hospice Foundation, the Health Service Executive and staff from the various hospital groups "speaks volumes about the commitment being made to improve the standard of end-of-life care".

“I cannot stress enough the need to ensure that in delivering end-of-life services, we put the welfare and dignity of the dying person, the need to provide information with sensitivity and bring comfort to relatives, to the forefront of our thoughts,” he said.

Recommendations

Mr Tyndall made eight recommendations for improvements, including ongoing education and training for staff, and continued emphasis on improving physical facilities and resources for dying patients and their families.

He also recommended increased access to specialist palliative care services with particular emphasis on out-of-hours services and weekends.

The Ombudsman also said terminally ill patients should be admitted directly to wards and not via emergency departments.

Geriatrician Prof Cillian Twomey said death was a "part of life" but we had "unfortunately" gotten to a stage where there was an "element of denial" and euphemisms were being used to describe it. Simple, unambiguous conversations were needed, he added.

Helping people care for dying loved ones

Tom Curran spent “the best part of 20 years” caring for his partner, Marie Fleming, who died five years ago.

Ms Fleming had multiple sclerosis and had unsuccessfully challenged the ban on assisted suicide through the courts.

Mr Curran told the Ombudsman’s event on Thursday that for the last seven years of her life, death had been “imminent” and they had been visited by palliative care doctors on a number of occasions.

“Luckily enough . . . with the care that she got at home, not just from me but from the other people involved in her care, she lived for quite a bit after that. This is where I think we should be putting our efforts – into providing care for people when they’re dying. But to do that, we have to recognise that people are dying and that is one of the biggest stumbling blocks.

“I suppose we, to a certain extent, were lucky. Because of a particular belief that Marie had, we constantly spoke about death because she took a particular interest in controlling her own death,” he said.

Mr Curran, who served on the board of Family Carers Ireland, assisted in designing a course to help people care for dying loved ones at home. But he said it had to be referred to as a course on “acute care in the home” rather than “end-of-life care” because people would not come to a course if they believed it was about caring for the dying.

He had found, in dealing with carers, that death was something “they deny”.

“We’re all going to die. None of us are immortal – it’s the only definite thing that we have in life,” he said.